Epilepsy Sucks!!!


My daughter is a healthy 12 year old, but being diagnosed with epilepsy has created a crap-ton of anxiety for her and the rest of us.
December 24, 2012 I got a phone call at 2 a.m. telling me that Danielle was having a seizure. She had stayed the night with a family friend after a busy evening at her great-great grandmother’s for an early Christmas.

A what???!!! Danielle doesn’t have seizures!!!  Fear dressed me.  Before I knew it I was at the friends house and Danielle was being wheeled out by an EMT on a gurney.   She reaches for me. My heart was instantly broken for her.
Inside the ambulance I was asked question upon question while Danielle struggled to come-to.  She was out of it.  Confused and crying.  It’s awful to see your child like that knowing there’s nothing you can do about it.  I myself had only seen one seizure in my life but it wasn’t my child.  This fear was something new, unknown, unwanted.
Once in the Children’s hospital ER, Danielle was “awake” and talking.  What a relief that was.   I cannot tell you how many people came in asking the same questions, “Is she sick?” “Does she have any diseases that you know of?” “Are there drugs/alcohol in the house?”  No. No. No. NO!!  Stop asking questions over over and over.. it’s 3am,  adrenaline has exhausted me and everyone and their momma has asked us the same damn questions over and over.   I was beyond irritated.   Here’s a tip… take a note and pass it on and stop harassing nervous parents!
The last straw for me was when I was asked to leave my child’s room so the social worker could ask some questions.  Ok. No problem.
As I stood outside the woman sitting with my child was asking her if someone sexually abused her. What the ..?? Are you serious right now?
You’re just gonna ask my kid this without telling me what you’re going to talk to her about?   My sweet girl just had a tonic-clonic grandmal seizure and you want to know if someone sexually abused her??? Danielle was horrified. Danielle is half Japanese and the Japanese half of her is very modest. She was beyond embarrassed.
She had just come to herself after suffering something she did not understand and now you’re asking her things like that?  Flipping retarded is what that is.

After a day or so she went home without a single answer as to why.  The doctor was horrible. Besides his bedside manner being ass, he spoke shit english.. and thats putting it mildly. On a good day I would be irritated with him.  What made it worse was that without a single reason he gave Danielle pills with the side effect of a flesh eating rash that can kill her.  IS HE OUTTA HIS DAMN MIND????  smh.

Once home I made a call to a surgeon friend of mine who made a call to a neurologist friend of his and within a couple of weeks we drove an hour north to Children’s Cincinnati.   Danielle was taken off of the meds, because it was stupid to put her on them in the first place. The new, wonder German doctor explained to us in perfect english, that this single, unexpected seizure, however scary, was a “freeby.” All people are allowed a single seizure in their lifetime without having anything wrong.  Sometimes it’s hormonal, sometimes it’s due to sleep deprivation, and other times .. well.. you just short circuit.
With that we go home to wait.  You see, if you can get to one year without another seizure, you’re pretty much scott-free.   We followed all the new rules: no climbing trees, no swimming alone, no being left alone, no taking a bath without the door open,  no staying up late and a 30 min break without electronics before bed; reading.  This is to transition the brain from stimulating lights to a calm state.  All was working like like a charm until 11 months later; after waking Danielle from falling asleep on the sofa while watching, “The Polar Express,” seizure #2 took place.

As I said, I woke Danielle up to go upstairs to brush her teeth.  I hear her older stepsister crabbing at her. I go up to see what was going on and I’m told that Danielle was throwing things and falling down. Shit. “Don’t panick.  You’re an ex-firefighter. You’ve got this.” That’s what I told myself. It worked.

Danielle came to the bathroom door. I asked her if she was OK and she said she was.. at the same time her arms jerked away from her sides. I asked again if she was sure she was OK and again she said she was then she fell face first into a basket of shoes.  She immediately popped right back up and was crying that she hurt her belly, at the same time I was rushing toward her.  It all happened so fast. I gripped her tightly and began to walk her downstairs. I asked my husband to call 911 and grab the emergency meds that stop seizures.  Danielle’s little legs gave out on her a few times before we made it downstairs.  I had her lie on the floor and told her I thought she was getting ready to have another seizure.  She cried and said, “I don’t want to have another seizure..” and with that she went into another full tonic-clonic.
I wasn’t there to witness the first one. I didn’t see her body stiff and arched back. I didn’t see her eyes rolled up or the foam coming from her blue lips.  I didn’t hear the gasps for air.
All I could do was watch.  I leaned down to her and stroked her hair while telling her it was ok, mommy is here although I’m sure she couldn’t hear me.  I remember praying aloud, “Oh God, I can’t do this again… Please help me.”

You never really pay attention to just how long a minute is until you watch your child turn blue.   How was I suppose to wait 5 minutes before administration of emergency meds?? I got to three. I couldn’t wait any longer.
As the ambulance arrived, Danielle had stopped seizing but she still lie motionless and out of it.    In the ambulance a too big of a catheter was placed in Danielle’s tiny vein.  A glucose check was performed and the medic was shocked to see a sugar level of 23. He instantly blamed the seizure on low blood sugar and hit Danielle up with a tube of dextrose.  None of that made any sense. The kids had just eaten cupcakes and hot cocoa before she fell asleep.. If anything else her blood sugar should have been too high.
Danielle was admitted to Children’s Lexington .. again.  A battery of test were performed .. again, and again, no one has a clue.  The fMRI and a 48 hour video EEG showed nothing, Danielle was diagnosed with epilepsy anyway and put on Keppra twice twice a day.  I guess two unprovoked seizures earn you a title like that.

It has been almost 8 months since her last seizure but the anxiety is still off the hook high for all of us.  Danielle doesn’t make a fuss, she wears her title proudly.  She doesn’t even tell me when she’s nervous.. I have to guess. It’s that prideful, modest, Japanese blood pulsing through her veins I guess . Hahaha. Recently we purchased a $700 seizure monitor for her bed and Danielle has begun counseling.  Both have been good for her, still, everytime her muscles are fatigued or twitch due to falling asleep..panick sets in.
Poor kid.
Just this past week I had to pick her up at 1130pm from a friends house because she was nervous.  She was so tried from being out in the pool and sun all day, yet she couldn’t fall asleep. She knows that sleep deprivation could cause a seizure.  When she got close to sleep, her body would jerk and she’d panick.
I feel horrible for her.

We do all that we can to deal with this demon on our backs. Most days we beat him, occasionally he wins.
What can we do but keep on keeping on?

Thank you for stopping by.